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Monthly Archives: January 2019

A few days ago, a 10-year-old boy named Seven Bridges died by suicide after being bullied relentlessly for his colostomy bag and chronic bowel condition.

Tragedies involving kids are quick to bring tears these days, but this one just sucked the air right out of me. This could have been my son.

L only had his ileostomy for three and a half months. We were lucky that his surgeon was able to reconnect his gut so quickly. He still carries the scar, but he doesn’t remember the stoma. But we know all too well that nothing is certain on this GI roller coaster, and if his remaining bowel perforates, if his current partial blockage turns into the real deal, if he loses more bowel – we could be right back there.

In the wake of this week’s tragedy, people with ostomies posted a flood of pictures showing their bags — usually carefully hidden away — to spread a message of love, support, and body acceptance. I looked back through L’s NICU pictures, planning to join in, and realized that I don’t have a single clear photo of his ostomy bag. I took a picture of the exposed stoma on his belly during a bag change so he could later understand where his scar came from, but for all the time I spent agonizing over keeping his bag attached and leak-free, I have no visual record of it aside from the occasional bag photo bomb like the ones below, where you can just barely see the tip of it sticking out between his empty hand and the rattle in the picture on the right, or can see a tiny corner of the wafer sneaking into the shot at the bottom of the picture on the left.

I hated his ostomy bag. It leaked. It would never stay attached. It trapped gastric juices and ate away the skin around his stoma. An ostomy can be a real pain in the belly. But an ostomy is anything but shameful. L’s ileostomy saved his life.

An ostomy is hope. An ostomy is a badge of courage. An ostomy means you are a survivor. In a world of NOT KNOWING, that vibrant pink stoma is the best visual reassurance you will ever have that your remaining bowel is functional and thriving. An ostomy means your story is not over yet.

You don’t know you marched. You slept, mostly, snuggled against my chest, oblivious to the noise of the crowds around you. Your father and your brother marched alongside us. He will remember, I think – your brother. He might tell you about it, later; about the people, the sign he carried proudly, the train you got to ride, the moment when I stopped him in the street, in the middle of all the people, to talk to him fiercely about love, and differences, and doctors, and about speaking up when you see something you think is wrong.

But you will not remember. And so I’m writing to you, that you might one day carry with you what’s in my heart tonight.

Your spark came into being three weeks after last year’s inauguration. As that historic shift swept our nation, I was filled with doubt. Your father and I had been thinking about you for quite some time, but I had been afraid – afraid a second child might be too much to handle alongside your brother’s medical needs; afraid we might multiply those needs; and now, just when we were feeling confident, afraid of bringing a child into a world and a future that suddenly seemed like it might come crashing down.

I was bolstered by the Women’s March, by the momentum I felt that day and in the calls to action in my community in the weeks and months after. And I came to realize that my very ability to suddenly feel fearful now, where I had not before, was itself a sign of privilege, and not one to take lightly. I vowed to do better, to do everything I could to make this world a better place for my children, and to raise them to keep carrying that torch.

But then, in April, in a year in which every day the news brought something a little worse than the day before, I found out you would be born a girl – and I was again afraid. I was afraid of what the future would hold for you; worried that I was not qualified, not strong enough, to raise the kind of woman I would want you to be. And as I recognized that fear in myself, I was ashamed. How could I raise a strong woman – be a strong woman – without first believing in my own strength, and in yours?

So this is my promise to you:

I will take you to marches.

I will teach you that you have a voice. I will show you that your voice is powerful, and that you have both a right and an obligation to speak out against injustice and suffering.

I will teach you to listen. I will show you that, while your voice is powerful, sometimes the most powerful thing you can do is truly listen to those whose experiences differ from yours; that you should apologize if you find yourself in the wrong; and that the only way to bring about real change is to make sure every voice is heard.

I will teach you to do. I will impress upon you that the commitment you make by marching means nothing if it’s not lived out in the words you speak, the calls you make, the relationships you forge, and the hours you give.

I will teach you to love. I will show you that love can span vast differences. And I will encourage you to love other women fiercely. I will teach you that we are strongest when we build each other up, and help you to recognize you are worthy of others’ love, and they of yours.

Sleep well, dear daughter, for there is a long journey yet ahead; but take heart. I will take you to marches. I will show you that your love and light can shine through any darkness. And I will never once doubt that you can be the spark that will light the world ablaze.